Category: happiness

There’s this key moment in Sudoku, when you find a clutch number that gives way to the others and begin to just fall into place like a waterfall. Much like the card you play in solitaire where you know you’re about to crack it. I had just written in a 6 I’d been trying to find for way too long. So began the waterfall, and I filled in the other boxes proudly– possibly smugly because this puzzle felt like it was out to trick me personally and now I had it in my hands! Until I didn’t, and in slow motion realized I had two number 7’s in the bottom row, and I just wanted to hit myself.

I tried to work backwards to fix it, but it was irreparably blown. I blew it. So, there went the last two weeks.

Somewhat of a Doodler

Of course, I’ve been up to other things. It’d be funny if after a month break all I had to show for it was a failed puzzle. Can’t all be winners.

For starters, summer reading. In July I was booklets after finishing Killing Commendatore, and sad I didn’t have more Murikami to lose myself in. Finally I scanned my own bookshelf for unread potential treasures and picked up Steinbeck’s The Winter of Our Discontent, which doesn’t sound like much of an apropos Summer read, but it’s just that. It’d sat idle on my shelf for years, even though that white house on the cover had caught my eye a thousand times. I had no idea the brilliance I was missing! It’s like suddenly realizing an old painting in your closet is worth some absurd amount of money. Once I dove in I didn’t want out, which surprised me when it shouldn’t have. It’s a classic, what did I expect?

The book was written in 1961, and given the passage of time I expected a natural disconnect. I’ve been so wrapped up in modern fiction– for too long probably. Yet somehow the America and the People and Assumed Human Decency that Steinbeck depicted 60 years ago were all completely recognizable today. You wouldn’t have to drive long before finding a sister town to “New Baytown”or look very hard before confronting modern replicas of his primary characters. Ultimately he tapped into the problems, desires, personal demons and moral choices most all of us face at some point– it’s just astounding to me that Steinbeck unearthed such deep, quiet struggles and could discern which ones were engrained in us and would stand the test of time.

Maybe that’s a litmus test for what makes a book a classic; if the suppositions and ideas can weather the decades and remain solidly true, unbothered by time, then you’ve got yourself a winner. I guess that’s pretty obvious, but it felt remarkable to come across.

The book reads a lot like a memoir of protagonist Ethan Crawley, who is so likable, in the first place, it’s hard to put down. I felt a relief knowing there was someone else who felt these ways –about money and politics and social hierarchies and expectations. He makes a joke out of probably 85% of his replies, and rarely does anyone get it, or choose to acknowledge it with a laugh anyway. That felt… familiar.

I feel similarly when I watch SNL sketches that crack me up. It’s not in the scene itself, but in the imagining of the writers who wrote the sketch, and knowing that real people out there recognized absurdity the way that I do. It’s easy not to feel seen in the world, but knowing other people see things the same way you do, even perfect strangers, feels like the twin brother to feeling understood. One scene in the book hammered this feeling in…

Crawley and his wife have been invited to another couples house to discuss “business”, i.e. money, but they have to go through the obligatory song and dance first. That means a formal serving of tea and then petty small talk. Everyone sipped tea and each delivered some anecdote on the subject of tea. He’s bored to tears. When it became Ethan’s turn to chime in, he brought up Danny, the town drunk, and a terrible nightmare he’d had about him. I laughed as he described feeling his wife’s quiet anger that he didn’t keep up the supposedly pleasant tea talk, and now everyone had to comment about a despairing subject. I wonder how many pleasant bouts of small talk I’ve Debbie Downer’ed with an some morbid comment that I found funny? Probably too many. Anyway, it’s a perfect scene.

A few of my favorite passages:

“So many old and lovely things are stored in the worlds attic, because we don’t want them around us and we don’t dare throw them out.”

I don’t suppose there’s a man in the world who doesn’t love to give advice.”

(Ethan)”Is Marullo part of the group?”

(Wealthy friend) “Certainly not. He goes his own way with his own crowd.” (The Italians. Marullo is an immigrant)

(Ethan)“They do pretty well, don’t they?”

(Friend) “Better than I think is healthy. I don’t like to see these foreigners creeping in.”

Sounds familiar eh?

“There is no such thing as just enough money. Only two measures: No Money and Not Enough Money.”

“No one wants advice–only corroboration.”

“I always put it down to fact that a wife never likes her husband’s boss or his secretary.” “All men are moral. Only their neighbors are not.” “Not only the brave get killed, but the brave have a better chance at it.” “For the most part people are not curious, except about themselves.”

I must have underlined half the book.

Next I read Hemingways The Sun Also Rises, another of the greats that’d been collecting dust not far from Steinbeck. When finishing it I wondered why I haven’t read more of the classics, because this was a damn great book too. There’s no good reason I don’t have more of them under my belt, except that I didn’t take enough literature classes in college I guess, and I hardly know what the real classics are. So, I’ve begun a list. Who cares. Anyway I won’t go so far into this one. As tribute to Hemingway and his distinguished, succinct style I’ll say this: The book is rather great and you should read it. You’ll have a swell time.

Especially if you love Paris, Spain, the Pamplona Fiesta, fishing, Bullfighting, and forbidden love. Hemingway was clearly a romantic. Did you know he was married four times? Only a true romantic gives marriage that many goes.

The passage that stuck:

“I had been getting something for nothing. That only delayed the presentation of the bill. The bill always came. That was one of the swell things you could count on. …You paid some way for everything that was any good.”

If that’s not the truth I don’t know what is.

I kept thinking about it’s application to health. That very often, when you have your health, it’s free. They say your health is like your breath–you don’t pay attention to it until you lose it. I think back on life before the relapse, and how I’d done nothing to earn my state of ‘decent’ state of health. I’d also done nothing to earn the relapse that eventually followed. It felt like someone at my door, come to collect a bill every day, when I hadn’t purchased anything. When well, I was getting something for nothing, without even knowing it. Once sick I had to begin paying for those somethings, and surrender what I couldn’t afford.

My hope, and I think my belief, is that it doesn’t have to mean the surrender of those things that matter most. When you’re forced to give things up, it feels just that way. But learning to live without them has been an ongoing lesson in letting go of what I thought I needed in order to live a life I liked. You end up finding a whole other you behind those old roles. It offered a strange opportunity to see my own self without these external identifiers. That allowed me to see the world differently too. I’m (still) learning it’s up to me, more often than not, how I choose to see both.

But, as the man said, you paid for anything that was any good. Many things that allow me to feel alive and good come at a cost. It’s like a tax on fun, in the currency of health. Actually I also pay the tax when I haven’t had fun. REAL COOL BODY THANKS. At any rate, I feel fortunate I still have people and places and experiences to (sometimes) overindulge in at all.

Like him. He’s worth it.

I imagine everyone has their respective “things” or indulgences for which a bill reliably comes. And maybe depending on what point we’re asked, during the playing or the paying, would we consider whether or not the juice was worth the squeeze. For me, mostly, paying the bill feels worth it when I’ve decided to splurge. Girls gotta live sometimes.

Everything has been breaking lately. The dryer, the tractor, my phone, the pressure washer, leaks in the ceiling, moisture stuck in the windowpane. (I could go on.) And for the last I don’t know how many months: me. Just add my body to the list of broken things. That was the thought I had while my mom listed everything going ka-putz on us.

I am getting in to bed and once again praying for the normal things, that we can find the right people to fix what’s broken, expressing gratitude for all I have, all I’ve been given, and a special intention that tomorrow will be better than it was today. A prayer I’ve been saying basically since Christmas.

2019 has been such an immense challenge. I feel like there’s some secret virus within trying to take me down, then I remember that Oh right, this is what a bad crash feels like, I’m just not used to them lasting so long. The last few weeks have been really trying.

I haven’t been getting out of bed until after 3–not really waking up I mean. As soon as I feed Monty then feed myself, I’ve reached my limit. The first ‘mini’ crash of extreme tiredness and weakness rolls in like a heavy fog, and I feel like I can do nothing but collapse under the weight of my newly dense body and immediately fall asleep. This isn’t so typical of my crashes. I rarely actually sleep that much at all. I’m horizontal, but not dead asleep. This feels new and I just can’t figure out what’s going on.

I’m writing this on my phone because trying to type on my computer from this position just doesn’t work. I have so much I’ve been writing and wanting to write and post, but finishing anything has been nearly impossible. I feel so angsty leaving the blog blank, so I figured I’d let it be known that I’m alive, I’m just probably asleep as you read this now.

It’s been hard accepting the strict terms of this crash, which has been very little upright time, and littler awake time, so it feels anyway. The weather has been beautiful, and this being my last Spring in this house, I’d prefer to enjoy more of it before I go. But for whatever reason I have really been taken down by such a “late blooming” crash. Typically by this time, the inevitable “Christmas Crash” has faded, and the good weather usually gives me a health boost. I don’t remember ever being so debilitated in the Springtime, but me no likey.

My parents are busy trying to prep the house to go on the market and cleaning and fixing things, yada yada yada, but I’ve been more of a useless flesh tube than ever! It’s crappy timing because I know they could use the extra man power, but luckily people like the amazing Matt has donated so much of his time to help any way he can. And I know friends like that are something to stay grateful for during all this.

And Miss B, the woman who cleans my house and literally makes it a sunnier place as soon as she walks in. She calls me “sugar” and “baby” and when she leaves she hugs me big and says “I’m prayin for ya Mary.” I tell her the same and she says “I love you, you’ll be better one of these days.” I tell her thanks. That I love her too. And that I believe her. And for whatever reason, I do. Cleaning lady? No, she’s like some angel who happens to clean up while she’s around.

She was here this morning and I slept through 3 of the hours she worked. The sound of the vacuum tracing lines in and out of my dreams. I never sleep while she’s here. We normally talk and laugh and even cry sometimes, covering all the bases while I drink coffee and she cleans in circles around me. I watch her energy in amazement.

Then Matt came around 2 and has been pressure washing all the cement around the house outside. Talk about back breaking work. I tried it for 10 minutes yesterday and had to come inside to take a breather. (Pathetic, I know) As soon as the machine started, I laid my head down and fell immediately asleep, not waking up until well after 5, feeling terrible. Matt was still working and I watched him outside as he worked, his headphones in and in his own little world as he managed to clean so much surface area. It feels like a miracle when I watch capable people do hard work. But these things that seem like miracles maybe actually aren’t–it’s just what you’re able to do when your body knows how to be a functioning human body. The miracle is the kindness of people who are so willing to help. I guess it’s just been so long, I can’t remember anymore what that physical capability must feel like. But let’s just say I fantasize about it more than ever.

I believe I’ll get there one day. That all of us will. I can’t explain it, but there is this solidity in my gut, magic ball that shows me living a life where I’m well, usually I’m outside pushing a kid on a swing. My kid? Don’t know, I hope. But I just have to believe this will happen in my lifetime. If I’m 60 well then, I’m 60. But my gut shows it far earlier than that. So just hang on yall. I know we will get there, we just have to make it through this ridiculous, tough middle part. It’s only like the 3rd hardest thing in the world! But we can do it. Our time of health is waiting for us. In the meantime, I’m lucky for people like Matt and Miss B, more grateful than ever.

So it’s back to my usual routine– getting in bed, saying my prayers and asking God to please, PLEASE (just to make sure she’s paying attention) give me some energy tomorrow and let my rest actually refuel me. There is so much I want and need to do. Like take a shower– it’s not asking so much! I know I will break from this crash soon, or I am hopeful and expect that outcome. I also know the toughest part of the game (for me) is surrendering while you’re in it. Remembering this too shall pass. Right? Right.

I feel I’ve been doing too much surrendering, and I wish there was a way to successfully fight back against this thing. But I’m out of ideas. And I’ve been sick long enough to know what happens when I do push against it. Might as well run my head into a wall. I can’t afford to pay anymore. I’m broke! Body broke. I know I just have to wait it out, and I will emerge eventually.

At any rate, maybe God reads blogs in all that spare time she must have. So maybe she can check this one out and throw me (and a few million others) a bone. Oh and Monty too, not because he likes bones but because he injured his leg yesterday and now he’s out of commission too. When I say everything is breaking, I mean it. Just great.

Anyway, I’m laying my trust in the universe, in an intelligence that knows more and better than me. But I am hopeful too, always hopeful, that tomorrow might be the day things start to turn around. And if it’s not, well, maybe I need to send a package of pill bottles and a petition to Heaven and get their attention up there.

A final thing- next to my bed is a medicine stick that was given to my dad by a traditional Indian medicine woman, back when we lived in Colorado. It’s made with a coyote skull on it and has a bunch of different symbolic items painted all over it, with feathers hanging down and other things I don’t know the meaning of. Of course my dad was sick and dying from cancer when she gave it to him. But I remember him in his compression stockings walking laps through the kitchen, living room and dining room, carrying that stick with him, with a smile on his face. Obviously it didn’t cure him, but maybe it made his struggle less. Maybe it gave him courage in the face of pain and fear. Maybe it gave him strength to fight for just the right amount of time before he knew his work here was done. At any rate, I look at that coyote face and ask my dad for my own kind of help, whatever kind I need the most. Hah, I don’t even know anymore. But it gives me hope anyway, having it here, having seen me through some very sick times and also seen me emerge through them as well. Not breaking. That’s about as much as I can hope for, for now.

OK, time to sleep for the seventh time today. I have many more happy things to write about, once I’m able to stay awake long enough to put them together and edit them properly. My mind of course has struggled too lately and been a bit scattered. It can hardly distinguish between dream life and reality anymore. Which makes sense considering how much time I spend on the other side of things. But I don’t think it will be much longer now. Hoping this coyote skull will bring some healing this way. Or at least the strength to smile through it, just like my dad did, who was up against far more than I am. Now that’s remaining unbroken. I’m so happy he showed me that was possible.

All the best to everyone, and I expect to be back on the up and up soon.

My mom told me to write that on every wall and mirror around the house. I was on the phone with her, basically in a downward spiral of apprehension about a major change happening this year that is mostly out of my hands. Allow me to rip off the band-aid: My parents made the decision to move to Colorado this year, back to my hometown. Pause for dramatic effect.

Many reasons played into that decision, a big one being that a majority of my moms family lives there and we will have a tighter community of support. Given that 2/3rds of our fam is sick and one family member is a dog, the move makes sense. It can be a tad isolating out here on the ol ‘farm’.

My moms casual reminder that it could always be great was a nice departure from the supposedly optimistic adage “Hey, It could always be worse!” I’m not sure that phrase has ever really made me feel better while in the midst of a struggle. It’s like “Well hey, both of your legs could be blown off!” “Riight. That’s true. I could have zero legs right now. Cool, thanks. I feel better.”

So yes, I have both legs, but I am still pretty afraid of the whole thing and I guess that makes sense given the scale of this. It’s a big change, and since I don’t have the health to live on my own yet, it’s one that’s out of my hands, which always adds a pinch of frenzy. I’ve sort of tortured myself thinking of ways to stay here, but I just don’t have the physical stability to do it. This last crash that’s held me down since Christmas just reinforces how mercurial my *health* is and how unreliable I am as a result. A few weeks ago the crash finally let up for roughly a week, then returned angrier than before, and I’ve been essentially a half-living disaster since then. Yeaaaah wooooo!

You can see how thoughts like that (I’m sick, my life is chaos, I don’t have jurisdiction over my own life) can play with your mind the way a cat bobbles a feathery toy around. It can take your whole outlook and shape it in many variations.

One of the hardest parts the last few months has been maintaining an open mind that this might actually be a good thing. It’s meant a lot of reigning in of my thoughts, which tend to go default mode into armageddon type thinking. It’s as though some small part of me decided early on that since I didn’t choose this, it wasn’t a good idea and it would end in disaster for my life. And it’s pretty crazy how easy and quickly those thoughts can assemble, pile on one another, and leave me completely convinced that I’m going to melt away and die in my parents basement…or some other absurdity. I don’t know where that fear stems from—I mean I’m pretty sure they have internet in Colorado.

I’ve had to work to clean up the useless, unhelpful thoughts that tend to mess with my mind and sense of wellbeing. By that I don’t mean I dismiss all the thoughts or feelings I have about this—which are of course, a lot. Certainly there is a legitimate sadness and type of grief that comes from leaving what’s been home the last 18 years. Those feelings deserve their own validation and processing because, damn, it’s sad to leave the people and place you’ve come to know and love so much. Louisiana has felt familiar and comfortable for a long time, and it will be tough to leave, even if I do plan to come back. ;)

What I am referring to are the haunting thoughts, the ones that make you feel bad about things that are not within your control.

This kind of thinking totally blurs and limits my perspective about the life I have. It dismisses all the good and incredible parts of it, doesn’t see possibility or feel hopefulness or gratitude. It downsizes the significance and value of people and things just because they aren’t in line with what I had planned. (I think humanity might have an addiction to plans but that’s another day) These are just hypothetical scenarios based mostly on fear and a future no one can actually know. Like Tolle says, it is always more empowering to face facts. Even when the facts are scary or we wish they were different, it’s in acknowledging the real and being present in the now that we have access to our innermost power and strength.

I realized early on how incredibly contrasting the outcomes are that emerge just from framing things in my head one way vs. another. This is something I do have control over, and it’s become pretty important that I put this ability to use, otherwise the ugly thoughts take over and down the rabbit hole I go.

It’s been a good but difficult exercise to step back and try to just watch the way my mind can interpret the same reality in two completely different lights. The modern mystics would advise to consider the circumstance from the point of view of an objective observer. Watch your thoughts, but don’t become entangled in them. Allow them to appear, then let them go. Easier said than done, of course. But at any rate, the mind astounds me in its duality. For instance..

Here is one side of my mind thinking about the move: Reiterate the story that my life is out of control, that the disease makes all the choices, that I have no say so about things and thus can’t really be happy because it’s not up to me. My personal growth and goals and contentment will all be stunted or I’ll cease to pursue them because my lack of health and other people have the wheel and I’m just a passenger to my own life. What’s the point in trying? As a passenger I don’t decide where I go and thus my happiness isn’t my option but one left up to others or whatever new circumstances materialize without my consent. I don’t want to go. It’s not fair I have to leave what feels like home. What about my family and friends here? What about my dream to live in uptown New Orleans one day? Now it will never happen. I guess I’ll go eat worms.

I can’t tell you how easy it was for each of those negative thoughts to formulate, one after the other, building on each other like a lego tower turning into a whole city…

Now here is my mind consciously thinking about the move: Colorado? That’s cool, I guess I’ll get packing.

Could the differences be that dramatic? And is it actually possible to participate in your own life that way? In The Untethered Soul, Singer makes the point over and over that of course it’s possible! We don’t always decide what happens, but we always the ultimate say so in how we react toward the circumstances of our life. And it’s those decisions, not what happens, that leave us either content, at ease, joyful, whole, or bitter, angry, jealous and depressed.

All it took was a few negative thoughts to quickly unravel into my making the choice to play no part in my own autonomy or the trajectory of my life. Just because I’d be living somewhere else, I removed myself from having any accountability in manifesting a life I wanted or that I could be proud of. That’s a crazy conclusion to make! But when you’re present and you actually break down your thoughts, you see what a huge majority of them are insane and simply need to be let go of. That’s not so easy when you’re hit with an onslaught of frenzy and angst, like a whirlpool that takes you down, where there’s no clarity.

So I have to practice at disarming the egoic force from taking over in my head, which I do by sword fighting the air with a Star Wars lightsaber. Just kidding. Like Tolle teaches, whenever I have a future based thought made mostly of fear, I replace it in my mind with facts that are actually true. I try to repeat positive reminders instead of playing a record of apprehension on repeat with a sad ending.

In other words, I do the thing basically all chronically sick people must learn to do at some point: surrender.

As always by ‘surrender’ I don’t mean give up–ever. I mean to leave a neutral space open inyour heart and your head where good things can happen because you allow a new path to be paved even though you didn’t design it. If I had understood earlier on in my relapse that reality doesn’t really care about your plans, I might’ve saved myself a good deal of pain from what was already such a hardship. I thought I could fight things that were already in place and moving quickly forward. Life was just waiting on me to catch up to what was real, instead of trying so hard to hang on to the way things were.

All I know is that there is a pulse to life, a certain beat that resonates deep within us as individuals and as a collective. We can typically feel through that pulse a general sense of what direction life is moving in. We can resist. Be the fish swimming upstream. Or we can lean in and greet life with an open and adventurous spirit, despite limits and changes and things beyond our control. It’s true I am afraid and I’m sad to leave what I thought would always be home. But I have been shown over and over the miracle of surrender, of allowing life to ‘move me’ and the amazing outcomes that can result when we feel fear but move forward anyway. It always comes down to following that thumping compass we hear deep within and far beneath us.

If it is, then I should feel pretty vulnerable and embarrassed after this. I’m sorry mom. I really do try and make you proud.

Is it just women?

It’s hard to say but I don’t think so. I do think requires more skill on behalf of the woman, I would think. Then again I wouldn’t know, I’ve never peed into one of those “specimen catchers” standing up. It seems like all you have to do is aim and shoot. Though I imagine splash-back could be a problem. Also I’ve heard dudes talking about the “split stream”, which would make producing a clean catch pretty tricky. But that happens to the lady folk too. So I’m a making a leap of faith in assuming I’m not the only one who has issues here. Right? Guys? Right guys?

I’ve had to give so many urine samples via those small plastic lidded cups over the last ten years, you’d think I’d at least have a technique mastered by now. But there’s just so little prediction in the direction that things will go once the golden exit begins.

You know the order of operations. First you go a little to see what direction your body has decided for the sample to go that day. Cool, you have a good idea. Place the cup in position. Aaaand begin. Aaaaand what is happening.

Somethings gone wrong.

It starts to go awry when a renegade stream breaks off from the group for no reason at
all. Whyyyy. I can’t yell at my pee mid stream and direct it on where to go! It doesn’t respond to verbal orders or worried yelling. Why would half of this small waterfall decide to break apart from the its fluid crew and travel backwards? Return to the team you idiot!

Obviously, things don’t get better from there. The cup can’t catch the rebellious run off and the original stream simultaneously because they’re too far apart, so now I have to guess which one has a higher volume and catch that one. And because I’m indecisive, I start to get a little panicky, I can’t tell which is better. Now I’m going back and forth with the cup between streams because I’m worried the collection isn’t enough, and I’m right. I often miss more than I catch in the chaos. Great. Now there’s pee in places I’d rather there not be pee. It’s just my hand don’t freak out. (I’m talking to myself now) I mean urine is sterile, so I hear. That was the whole point of those deep breaths I took before beginning the process. You can do this Mary, just pretend it’s a game at the carnival, you’re a competitive gal.

I liken the stress to that of being on a motor bike and panicking that you’re going too fast but in the frenzy you keep hitting the gas, gunning it, instead of the break. You increase in speed until you crash and your shoe flies off. That actually happened to my friend Cody and I once. My shoe really flew off!

Anyway I guess it’s just the stress of getting it right and knowing there’s a limited amount

The Hell is she doing in there?

of material to work with that I end up internally yelling with my head down “WHAT. IS GOING ON DOWN THERE?!GET. IT. TOGETHER!” It’s like yelling at some kids I’m babysitting who I can hear are misbehaving in the basement. I hope I’m not accidentally
yelling that out loud in the stress of those 30 seconds. I can just see the nurses faces upon hearing the racket inside the bathroom, shaking their heads in resignation, Where did we go wrong with our children?

Now I have to place the cup on the counter, but why is the counter always wet? Is that someone else’s renegade pee? Impossible to know. Also, eeeew. So I awkwardly wipe down the counter, (still squatting on the toilet by the way), place the cup down, screw on the lid, make sure that’s wiped down and examine my sample. It’s like I want the nurses to be impressed with it. “Wow, did you check out Gelpi’s specimen cup? Not even a droplet on the outside!” I realize they’re wearing gloves and couldn’t care less about any of this.

Then you open that little stainless steel door to drop off your cup, and you see all the other specimens. Woah! I’m always surprised by the array of yellow colors that make up peoples urine. It’s like 50 shades of pee in there! I can only hope mine is the right shade of neon.

This is clearly Ms Gelpi’s perfect clean catch. How DOES she do it!?

It feels like an unnecessarily stressful event that I’ve had to do so many times, I just can’t figure out why I’m not better at it. Is there some method I’m unaware of? I had to give a sample yesterday just like I did last week and the week before that and a month before that, for all kinds of fun reasons. And still, I entered that bathroom, wrote my name on the cup, took a few deep breaths, and once again the urinary chaos began.

At least this time I didn’t fall. Yes, that is a true and exceptionally unfortunate story. It happened in the E.R. and I’m pretty sure they gave me a horse tranquilizer or something close to it prior to calm down the excessive adrenaline. I was in SVT (Supra Ventricular Tacchacardia) and flopping around like a fish out of water. Then I was tranked and expected to give a sample without help! So yeah, I fell. Let that image settle in and make the rest of your day happy.

Wait, where am I.

Anyway, maybe I’ll develop a better method over the next few months. Or maybe giving urine samples will always just be one of those things we all have to do that are oddly more difficult than they should be, like hanging curtains. Don’t worry, because I know you might, I’ll let you know if there’s improvement. Stay golden yall! (I had to)

Universe, God, sky, grey clouds, screeching frogs outside– helllp meee. Someone drained my life force in the night, and now I lack the will power to even use an exclamation mark. Not sure what happened. But I couldn’t go on letting myself be buried by the wet blankets of my mind. I had to do something. Something positive, and fight back against the road to stagnancy. I felt like I was slowly turning to cement! Hey look there, I used an exclamation point.

Of course the weather is that in between weather that makes entire cities look like they could use therapy. Not sunny, on the cusp of rain but not raining, just a wet, grey, dish rag that drips sometimes and peeks the sun out in others and never definitively decides what it wants to do. So, can’t rely on the weather to help put humptey dumptey back together again. Find something else.

I would bathe but I don’t have the energy. My arms are getting weaker. I need to lay down again. I’ll try to think of good things.

***

OK, I’m back. It’s been almost two hours. I didn’t sleep. My willpower seemed to be dropping like a heartbeat beeping slower and slower on the heart rate monitor. Beep. Beep. Beeeeeeeeeep. She’s a gonner. It’s like all the feel-good, or feel-right chemicals in my brain have truly drained. The stuff that makes you want to go and do and play were drying up. Or already dried.

While I’m a little weak, a little dizzy, the residual migraine still thudding behind my eyes, it’s not my body making today so hard. Well maybe that’s the setup for this mindset, but it’s calming my frenzied mind when I have no physical ability to match it that feels impossible to do. Keeping your mental sanity while waiting on your body to come back to you is probably the hardest part of all of this—a challenge that needs constant knowledgable reminding about from people who know better. I’m amazed how easy it is to forget simple truths. Clearly I’m still learning. I guess that should probably always be the case, if only I were a bit quicker at picking these things up.

I feel the need to do so many things, but most of them aren’t doable right now. Then I feel doubly bad about not being able to do what needs getting done. I guess that’s why I’m sitting at this chair and typing, because writing is one thing I can do.

I have learned that you can fight back against days like this. Despite nothing sounding good—for example, no type of music sounds decent to listen to, and the idea of watching TV or a movie feels even more depressing. (During the day) Even reading the book I’m thoroughly enjoying (19Q4) doesn’t feel right. I read fiction at night. None of these give the impression they would fit. If I were healthy I would go for a run, or to the coffee shop, change up the scenery and get those endorphins going. But since that’s a no-go, it’s another creative challenge to figure out that comes with the territory.

Sometimes just admitting that you’re having a crappy or hard time helps create the tiniest gap between you and the experience you’re having. This is what Tolle teaches—finding space between you and the circumstance so that you might see it from the outside objectively and not get lost in it and take all of it personally. (The Why Me Route)

You can write it, say it, draw it, sing it, whatever it is. But transferring some of the weight onto some other medium helps prevents you from becoming tangled up and trapped in it—where every thought flowers at once and the idea of living the rest of your life frantically swirls around your head like a hurricane and feels impossible. The enormity of it all piles up because you think I can barely get through today…how will I ever get through the next three months? You start thinking 5 years into the future, your will power plummets, until something—in my instance, Monty scratching at the door— snaps you out of this useless futuristic angst and brings you back to right now.

All I have to do is survive right now. Which sounds easy but when your willpower is at a zero, it’s actually a praiseworthy task to achieve. I survived another day! I can’t survive anything 3 months from now, I’m right to think it will be impossible, because I can’t have a clue what will be in 3 months from now. It’s easy to think everything will be the same, and it might. Or it’s easy to see a dozen problems that all feel unsolvable. But all I have to do is look at the history of my life for proof that it can change in a snap, and 90% of the time, you don’t control the change, or predict it. You only go about figuring out how you’ll respond and adapt to it when you get there.

So how do I make now better? Unfortunately having a rebuttal for your mad mind doesn’t make it simply stop in it’s tracks and suddenly you’re grounded and fine. I’m not that good yet. Just knowing what’s helpful and what isn’t doesn’t immediately make you feel happy and give you your life juice back. But it might help slow that thought whirlpool down. It might allow for the smallest stillness to get through to you and allow the truth to calm your fast beating heart. Mostly it involves just having to live through the tension of the feelings and the knowing simultaneously that they won’t last. They may not even be true. As hard as it is to work against something inside you that feels like it’s actively dragging you down or drying you out, I know that trying anything is typically better than rotting on the floor like roadkill and trying nothing at all.

On my two hour break, I listened to a podcast called Revisionist History by Malcolm Gladwell. I highly suggest listening to it, but it surprised me how just hearing someone else’s voice and someone else’s story can help pull you out of the thought whirlpool of your own. It’s nice getting out of your own head and being exposed to what people before you have met and endured in their life. I listened to Sammy Davis Jr.’s story A Hug Heard Round the World and hearing of his life and challenges put things in perspective, at least temporarily. This is the importance and power of story telling, I think. It straightened me out for a while.

I also downloaded some foreign language apps on my phone a few days ago so I can start to remember and re-learn french. I’ve forgotten so much of it and I miss it. I plan to visit France for a while when I’m better, so I’d like to get back to moderately fluent. I can’t wait to sit on the sidewalk again, drink my cafe au lait at at a table with a white tablecloth, and write in a fresh notebook Well, I’ve finally made it back to Paris.

I didn’t want the invisible vacuum of thoughts inside me to win, so I had to fight back and share these crappy thoughts with you, sorry guys. I guess writing these thoughts out was my way to create the gap. The ability to step back and watch today unfold was my way forward. Otherwise I was slowly being swallowed and nobody wants that. This was my version of winning! Hey look at that, I used another exclamation point. That’s my comeback for today, using an authentic exclamation point. A sign of life. Beeeeep. Beep. Beep. She’s back people!

Let’s talk. I’m just going to write in list form. It’s easier on my brain for whatever reason right now.

I SHOWERED.

I can’t explain how good it feels to be clean to such a degree as an hour shower will get you. But even better is the smell of my shampoo emanating from me now. I have so little to brag about, but I have to convey how good it feels to smell this FRESH people. It needed to happen, I was too sick for a while, and now finally it has. I sat on a geriatric shower chair instead of taking my typical bath. My wobbly, cinderblock legs are smooth. My skin is clean and feels almost cottony. I spent more than 30 minutes picking out Shampoo at Walgreens a while ago, searching for the perfect scent and I seemed to have found it. It’s left my hair emanating the scent of some subtle, tropical, white flower with tiny pink buds (and no nitrates!) Whatever that means. The scent is what Jennifer Anniston’s scarf closet would smell like. A shower is nothing, I realize. But in my bite-size, do-nothing world, a shower and this residual perfume of the Gods makes headlines. “Local Girl Smells Good!”

2. Secondly, in insanity news, the SAINTS JUST LOST. (Pause. Pour some beer out.) It was no one’s fault, it’s just that sometimes a defender leads with his helmet and interferes with a receiver in order to prevent a reception and somehow he doesn’t get called on it and essentially the whole outcome of the game changes. The non-call smelled like the opposite of J Anniston’s scarf closet. It smelled like what an old Southern man with leathery skin would say as he put down his beer with his eyes glared at the TV: AH HORSE SHIT!

3. Oh good LORD, my hair. This foresty, soapy, new car yet feminine fragrance…How is it even possible?!

4. OK. It’s not like the Saints losing was any one persons fault. These things happen. I mean just like sports writer Jack Baer wrote “If it wasn’t pass interference, the helmet to helmet hit almost certainly should have been called a personal foul. Either way the Saints should have received a 15 yard penalty and a fresh set of downs with a minute 45 remaining, which almost certainly would have effectively ended the game.” See? These things just happen.

5. Idea. Maybe I could charge money for people to smell my hair up close. This is how I can pay for the research that the NIH will not. $100,000 per whiff. It’s also how I can earn some kind of money if my Sofia-Dorothy relationship with my mother goes South or she dies in her sleep and I need to make money to keep the farm afloat. Either one. (Kidding mom, you know you’re my hero and you can never die)

“Hey Can I Smell Your Hair?” “Yeah, it’ll be $100,00. Make it quick.”

6. I can’t believe that non-call just happened. I still feel so shocked and bummed about it. At the same time I feel so hashtag blessed to smell like flowery beechwood that it diffusses the sadness a decent amount. What if I smelled bad and the Saints had a playoff game that was STOLEN right out from under them? Talk about feeling crappy and smelling like craigs-list. I mean I wouldn’t say the game was stolen from us…it’s just that

7.

The New Orleans Causeway Tonight. We’re subtle with our emotions.

8. Monty has gas. I realize Monty always has gas, but this seems specific and particular gas. It’s smells sad. It feels like especially offended gas that could only be expelled for a special occasion. He’s looking more sad than guilty, as though farts are the only way he can physically grieve. They are the tears of a game getting blown. The gas makes me sad, but then I smell my hair and feel glad. It’s funny that smells can make us temporally happy or sad. The realm and cause of human emotions is really pretty extraordinary.

9. Were we really supposed to lose that game or was it a comic hiccup? Some existential mistake? Tolle would say it was no mistake that we lost, because it’s the experience we endured. “The fire of suffering becomes the light of consciousness,” he says. But I fear tonight the light will burst from cars lit on fire and a ref that requires a 24/7 security detail. I joke I joke. I believe

10. I wonder if my shampoo truly comes from Maui. Something tells me it doesn’t. But due to the beautiful potency of its scent how could I care from where it emerged?

11. Cleanliness is Godliness.

12. Monty’s gas has begun to transition into “It will be OK. But that call was true and authentic stinky bull-dung.”

“Just can’t help my grieving gas!”

13. Like my mom says, at least we don’t have to be tense next week.

14. BUT MOM I WANNA BE TENSE I JUST WANNA BE TENSE WITH REFS THAT MAKE SURE THE PLAYERS DON’T BREAK EACH OTHERS HEADS!!!!!! Fine I’ll go to my room. No, YOU’RE being obnoxious! …Yeah I have some darks I need washed.

15. Saints, I’ll be your forever fan. Next years is ours. But on a personal note, you’ve given so many of my Sundays a happy distraction from what hasn’t been an easy year or years. Watching you play has energized me to a happy place, and I’ll always BELIEVE DAT you’re a team of good men, win or lose. I’m grateful you’ve made it as far as you have. You’ve been the joy of Sunday’s for much of my family and I, and I hope you feel the pride of the whole city behind you, my dog Monty, and me. See you next season.

Family, Friends, Strangers, Enemies, Grandmas, and the future class of 2019: hi. I’m not dead. Figured I should get that out of the way.

It’s been so long. I’ve missed you. I’ve missed writing here. I have an underlying angst that eats at me when I know zero words are emitting from the blog of roughly 12 readers a day. Still, I don’t like it. Mostly because I still so often spend hours a day writing, , but reading it back over it the next day, the coherency is lacking and it’s clear my spaghetti brain is hindering a collective blog, so I don’t post it. The next day I write, I try to edit, and the process just repeats itself. All of it resulting in DEAD AIR! Boooo.

Anyway, as you might’ve guessed, I’m still crashed. Or on very shaky ground anyway, and I’m not really sure why. Weakness comes and goes, my restless legs/crawly skin is constantly flaring, but it’s this damn pain in my head that is consuming, constant, and just plain exhaustive. More than weakness or any other symptom, it’s a resilient pain like this that keeps me from writing long enough to edit and post, which makes me hate it all the more.

This head/face pain started to get to me psychologically a few months ago. I’d find myself looking forward to sleep given the escape it offered from the pain. That’s not a grrrreat way to live, but it is A way to live, so there’s that. It’s just the reality right now, but I do genuinely believe we’ll find the answer to this. Or we’ll at least find a remedy for the pain. Even if it issome South American JuJu bean sprout mixed with Norwegian honey bee oil and antler-fuzz brewed into a tea. I’d drink that crap-tasting tea 10 times a day. The point is, I know it won’t feel like this forever, so I’m just hanging on and HOPING THAT A FIX COMES ALONG PRETTY QUICKLY. Sorry I thought if I shout-typed it that God or someone might hear me better.

For now there is pain medicine, dousing my face in peppermint oil, and putting a frozen ice pack on top. Then I lay there, like a useless slug waiting to get stepped on. I’m destined for greatness!

#Useless Slugs Unite

On Monday I had my face injected with steroids and lidocaine to see if that would do anything. I do think it helped the back of my head, but so far not a lot of luck on the face or top of the head. Although the injections did give me temporary human horns, appropriately in time for Halloween. This picture is actually after they’d gone down a bit.

She-devils Unite!

Walking back into the waiting room I told the secretaries not to judge my she-devil horns and they burst out laughing. I guess in a place that is usually so serious and nearly tense like the sign-out counter at a doctor’s office, something about that interaction made me feel lighter.

Other than that, life remains a constant search for balance in-between hope and despair. Obviously, it feels much better to be hopeful. But damn if despair doesn’t grab you by the feet like an anchor and drag you under. It can be so easy to fall down that hole, and much harder to make your way out.

I know I write about it a lot, but it’s because chronic illness is such a marathon. Staying optimistic, believing your life can be good, finding meaning in the mud, laughing when it’s funny even though it’d be just as easy to cry, are all your job on top of the physical battle. It’s so hard not knowing where the finish line is or what it even might look like once you get there. If you’re like me, you’re always trying to calculate how your life might go if you’re sick 2 more years, 5 more years, 20 more years. It’s infinite…

It’s an impossible hypothetical that will only leave you confused and anxiety-ridden. Marc Nepo said confusion is the result of trying to make sense of things too soon, and I am constantly trying to do that. Make things fit before they’re fully formed. It’s hard to trust that wherever you are is where you’re supposed to be, and yet in hindsight, it seems that somehow it always turns out that’s the case, even when things have resulted in pain or anguish.

Nepo also said the repeated hindrance to joy in his life over and over has been hesitation. So I’m continually trying to just live the moment I’m in–1 because honestly it’s all I can handle. But 2 because when I start thinking too far into the future or assuming I could possibly change things that have happened in the past is when I actually suffer. When I interrupt my thinking and say Mary, all you have to do is make a cup of tea right now, I’m brought back to the only thing that matters and where I have any power, which is now.

It’s been an interesting experiment, this whole chronically sick life thing that I think I may have signed up for ambitiously before I was born because I’m stupid and don’t think things through. Still, it’s interesting, because it’s a perpetual challenge, especially creatively and in thinking. Like this idea–that you can be in a lot of pain, but also laugh hysterically in your living room, alone, at something you’ve seen twice before. This week I was watching jeopardy casually with my parents and I filled up with an overwhelming sense of gratitude, and despite my raging head and restless, squirming legs, such a strong positive feeling made it’s way to the surface anyway.

The same happened when Matt brought me lunch out of nowhere on Tuesday, because he happened to be eating at a place nearby. I had a migraine, but when I woke up I had a meal to eat and didn’t have to think about it or muster the strength to make one. Just deciding on food can be totally exhausting. My gratitude was overflowing. And when Monty was afraid during the rainstorm and I laid with him on the floor, because I could, petting his velvety ears as the poor guy shook with fear at the rumbles of thunder, the love I felt for him welled up inside me, to where I could feel an actual warmth in my chest. I think how lucky I am to have such incredible people (and dogs) in my life and it makes the physical pain feel less powerful.

There are many, small moments like that, where gratitude and humility and laughing out loud at something stupid all pop up and show their beauty despite whatever physical pain I’m feeling. The dichotomy of those two things and experiencing them at once is an intriguing piece of the puzzle that’s teaching me how to be a human being. I think I’m getting pretty good! But I’ll never be as good as Monty, the happiest, most grateful, and present person I know.

Actually Destined for Greatness

Case in point, he was not at all upset when his ball became stuck under a huge flat rock that was filled with muddy rain water underneath. He spent 30 minutes digging and splashing and maneuvering for that ball, and a half hour later he came trotting to the porch, a newly chocolate lab, victorious with said ball that was almost a goner. Seeing how happy, proud, and brown he was made me laugh so hard, I couldn’t help but feel happy to be alive, despite feeling like death. Witnessing the fulfilled, unflinching life that Monty lives, it’s fair to say that dog does not hesitate or miss lifes’ moments. His joy is infectious, and I will always be grateful he’s been by my side for as long as he has.

My head is starting to fill with pressure and expand like a balloon, or so it feels, so it’s time to slug it up for a while. Then maybe I’ll enjoy Wheel of Fortune with my parents. See? I have to laugh at it. Was this the life I envisioned at age 34? Would I have chosen this? Maybe not. And yet I am learning, learning, how to find a sense of fulfillment and wander in the unchosen existence that is uniquely my own all the time. Each time I inch toward trusting this experience, the more momentous life becomes, the brighter the mundane moments explode into something special, and the more my soul awakens at how incredible it is to be here at all.

I have not seen this film, and I don’t think I actually need to. This trailer is so extraordinary, I think it might ruin how much laughter it brings me if I were to cross the line and actually watch it. If you need a good laugh, please watch this trailer, from a real movie made in the 80’s. (Not ironic) GYMKATA promises to bring a lot of things to the table. I don’t know what all of them are, but fighting from a pommel horse in the middle of a village and laugher are foremost.

Just knowing this film exists brings me comfort and is somehow a reminder that everything will be OK, even in times when it feels far from it. I don’t know how, this is just the power of humor people! And I believe in it, wholly. So, here it is, the film trailer that will save us all. Or at least make us laugh, which counts for something.

Health, Happiness, the 80’s

*Thanks to Matt, for showing me this glorious trailer one boring afternoon. It has brought me so much joy.

Two weeks ago, my family came together for an advocacy event coordinated by incredible friends and family in our old hometown, Grand Junction Colorado. The function was a success and took a lot of hard work by people who cared and put in major time and heart behind the scenes. My sisters friends Avery and Jordana, Jordana’s dad Harry (awesome dad name) and my Uncle Mike who was under the impression that months earlier he’d retired (Nope!) Besides them many more came together, helped fund, offered services, and sponsored the event in order to make it happen. As for me, I sort of just had to show up.

Beyond friends and family that put in the effort to sort out logistics doing an incredible job, the article in our local paper impressed me majorly–not just with it’s advertising of the event, but by publishing a full page color spread, covering our families stories respectively and including a digestible narrative about the reality of MECFS and giving it a wider context. I felt happy and surprised to read this article right out of my humble hometown, when such a surprising amount of press from noteworthy and “big league” media can completely miss the mark.

Noice!

Autographs for Uncle Mike bc I have No $ For Him

The dense, nearly unbelievable history mixed with present political roadblocks and numerous scandals all under the M.E. umbrella make the disease particularly hard to write about and convey in one article without writing a novel. Not to mention the personal, human interest side of this, and the toll it takes on patients and families. Very few articles contain both, and many more are simply clumsy, neglecting essential facts or even accurate data. Due to our general lacking presence in the media, I know someone might think “Well any press is good press, right?” But I struggle with that adage. When you’re fighting a thirty year old false narrative, not all press is good. In fact it can easily be bad by perpetuating fallacies, inaccuracies or misconstrued data, and even celebrate studies (like the PACE Trial) or treatments which have done the MECFS community incalculable harm.

So I guess, no, not all of it’s good. Too often I’m excited to see press about MECFS only to be disappointed beginning just the title, which will call the disease “chronic fatigue” or in the first line, inaccurately label the number one symptom as tiredness. *facepalm* But I digress, I didn’t mean for this to get into the media missing the mark, or the missing media in general, because today is about advocacy. And when people with this disease, their caregivers and loved ones, researchers and doctors are out there fighting for it, none of them will get it wrong. All of them know the numbers, the history, the truth, and the unfortunate personal toll.

The event in Colorado was a success. And maybe I’m a romantic and would call it that if even 3 people showed up, because that’d be 3 more people who were aware of something that is so rarely seen, heard, talked about, or understood. But many more showed up, family and friends we hadn’t seen in decades, strangers too, all to learn about a disease on a Sunday night, when it would be so so so easy to stay home and just forget it. It’s hard to express the humility and gratitude you feel seeing people show up, tell you they’re thinking or praying for you or your family, or even a stranger offering his hope and encouragement for the future. It all meant a lot, really. So THANK YOU again and again.

After the screening of Unrest, the 3 of us (my mom sister and I) spoke and were followed by Linda Tenanbaum, the CEO of the Open Medicine Foundation and human firecracker, who infused hope back into the audience, who were probably mostly thinking Dang, this is a shitty situation. Shituation? She closed out the night before it was on to the reception. The firecracker (Linda) is an amazing speaker and doer, and having her attend the event only amped it up. Getting filled in on the OMF’s work and most up to date findings was a truly optimistic breath of fresh air.

The OMF is at the forefront of research and work purely off donations, as in every cent goes into the science. All participants–brilliant researchers, doctors, scientists and logistical coordinators work on their own dime. Why? Some of them have a child or loved one with this disease, others just a determination to find answers to something with so few. Due to the explicit lack of urgency in the government when it came to MECFS interest, when submitted applications for funding biomedical research were repeatedly turned down by the NIH, these guys got together and decided it was time to do the work themselves. And thanks to the generous donations of so many people, they’ve been able to achieve and find incredible things. There is still a lot to do and this kind of science will require a lot of GREEN. But hey, maybe the #MillionsMissing protestors out there today in the streets will help change studying a disease with public charity to adequate funding provided by the Agency whose job it is to fund.

When we attended another event much like this one in California in October, it took me roughly 30 days to recover. I know because I videotaped myself everyday for a month to track how each day went after we returned. It’s a long trip and these events, while incredible and worthwhile, take a toll. The socializing alone is just like physical exertion, and the event in GJ lasted roughly 6 hours. While I’ve recently undergone an upswing in my health, I watched my mom that night—speaking and catching up with many old friends. Sitting as much as possible, not having even one glass of wine or “playing with fire” by any stretch of the imagination. She played it safe and did what she could to pace herself. You’d never guess anything might be wrong by looking at a photo from that night.

Yet at 6 AM the next morning, I woke up on the couch just in time to see her collapsing, my stepdad with his arms outstretched underneath hers, catching her as she slowly went down, muscles twitching and trying not to pass out. She’d woken with a crushing migraine and often if she doesn’t take her medicine in time, some epic vomiting is soon to follow. She’d taken the meds but sometimes the migraine wins and all you can do is endure it until it’s had its way with you. She’d run to the first bathroom feeling her mouth start to water and knowing what was to follow, but my brother had just moments earlier gone in to shower before his early fight home. (Way to go NICK)

So she was on a quick race to the bathroom on the other side of the house, but midway through started to black out, and was luckily caught by my stepdad from behind while her muscles seem to go limp and the room blurred in and out. I can’t remember what was said but I knew she was going to spew quickly and ran as fast as I could for a bowl. I made it back just in time, with a casserole dish, which isn’t the best of bowls to puke in if we’re getting technical, but hey, better than the carpet.

After a nice little vomit session on the floor, we both pulled her up to the chair where we put ice on her neck and wrapped her feet in heat packs to try to get the blood to flow downward. She sat with her eyes closed, as though she were concentrating hard on something. But when you’ve experienced that kind of pain, you know just what it looks like, and that was it. She waited and Marc sat nearby for anything she might need. After an hour she was finally able to walk back to the bed and eventually get back to sleep. So, that was her morning.

And from what? From doing what healthy people do all the time. Watching a movie, catching up with friends, eating, hanging out. This is what put her over her envelope. Watching her I just kept thinking about the invisibility of it all. That no one would guess the woman they were with last night was in the extremely painful and scary position she was in now. But this is the story MECFS and those who suffer with it live it all the time. You see us when we’re well enough to be seen. Otherwise most of the suffering goes on behind closed doors, and no one presumes otherwise.

Today is #MECFS Awareness Day, and thousands of people around the world are taking part in the #MillionsMissing protest thanks to MEAction and many more. I wish I were one of them but I just couldn’t make it happen. So I made my sign with shoes attached on behalf of the three of us in the family to represent. It was only a tweet, but it was the best I could do.

I hope anyone reading this who participated in the #MillionsMissing event knows the immense gratitude and unity from millions of us who couldn’t physically be there. This kind of advocacy isn’t easy, particularly on those who have the disease. They will all pay for it in terms of their health in big and small ways. And yet it’s what must be done in order to make the invisible seen, give the silenced a voice, and the truth a solid platform on which to land. My gratitude runs so deep to all those who organized to make THIS happen, and you know as well as I do, it doesn’t end here. We’ll fight even if we’re left beat up until things change the way they’ve needed to for decades. Hang tough, all of you. The Gelpi’s are with you in spirit. Thank you for your bravery, for caring, and for risking your own health so that we might all have a chance at actual health in the future. Thank you, in every language ;)

For nearlya month now, I’ve been writing a blog that would normally take me a few 3-4 hours to write and a few days to edit, if I were in “regular” enough health and other things were ordinary. I catch myself in a strange predicament, so I’ve abandoned that last post, which may have been THE BEST THING YOU EVER READ because I can’t damn well get more than a paragraph written on a good day, and the editing has become arduous for numerous reasons outside the one I’m about to describe, but to the point where writing, my one constant among chaos has taken a further hit. And since I’ve learned, for me, writing a simple status of things in my own life is easier than trying to put some thesis about technology together (one day) I’ll just bring you up to speed, because I’m not sure how long it will be like this.

If you read in my past blog, you saw I’ve been fighting some switcht that seemed to turn on a charged degree of restless body syndrome and skin crawling, which have been part of my symptoms for years. With a switch of pain medicine that didn’t seem to improve anything and cause the hugely uncomfortable side effect of skin crawling and an insatiable necessity to move my limbs ,Unfortunately, when we stopped the medicine and returned to the regular regimen, for some reason, the RLS (or restless body syndrome + skin crawling) did not, which turned up a conundrum.

We’ve yet been unable to find out what “fliped the switch” that made these symptoms turn on with the cherry on top of skin crawling, and why stopping the med that seemingly caused it to start wouldn’t naturally cause it to turn off. If anything the symptom has stayed the same and many, many restless days and nights become worse, and well, hellish. Waking up to squirming legs and little charges running through your body with your skin crawling on top, Is Foldiers in your cup! Kidding, its awful. I think I’d prefer pain. And since the pain has continued, now I get both, yeah! But if i had to pick between the two, I’d choose pain. It’s discomfort is different from that of squirming limbs, electrical bolts and your skin feeling like the audio equivalent of nails on a chalkboard, if that makes any sense. Besides all that, for whatever reason, the medicine I’ve been taking for nearly a decade that has controlled the symptoms 90% of the time, seemed to just suddenly stop being effective. It’s as if this clinically same symptom is originating or set off by something else in the body, and that has rendered my old meds useless.

Where I am lucky, is that we found a medication that has been effective in controlling these symptoms, which truly, at times, feel more tortuous than pain. Where I’m a little unfortunate is that the medicine which calms down the lightning/snow/hail storm going on inside me, is the same medicine I’ve been taking for sleep for the last 2.5 years. At night it has done me wonders, since for years, even with the help of a sleep aid, I rarely made it through a full night a of sleep, saw a lot of sunrises, and often had tangible nightmares and at times became trapped in night terrors. (NO fun) Luckily this RX has not only worked best for my quality of sleep out of all the meds I’ve tried in the last decade, but it also seemed to reduce my nightmares, or at least made me sleep so well, I don’t remember them, which is, you know, fine by me. The obvious problem is that when you’re taking a pill so incredibly effective at helping you sleep, but you’re now taking it at 10 AM…you’re going to run into some issues. Like, um, what’s that word? Functioning, that’s right, you’re going to have problems functioning in daylinght. But without the meds, life is even less functional with misery stirred in. I wish I could say I were stronger and I could do it without the meds, but believe me, when you feel like you’re being tickled from the inside of your skin and your legs wanna kick and squirm and flex outta control when you just want to sit or lay and some strange shock or charge is making its way from head to toe frequently, it’s just not doable. You’re fighting the whole day.

So, I went from misery and fighting, to z o m b I f i e d and tired and unbalanced (pysically) because that’s some of the med’s effects, which I”ll add, are HUGELY more tolerable than life without them. But, taking a sleep med during daylight, as I’ve explained, is draining me. I move slower than before. My cognitive ability feels like it’s being run by a fat hamster with heart disease. I can feel the effects that I know are from the meds, but it takes just the thought of one morning in January to make the “pick your poison” choice easy.

At a bitterly coincidental time, I was told to ween off that pill by my doctor because the FDA had been coming down hard on physisicians and who they prescribe to and how many doctors are prescribing to one patient could compromise their license. Sweet. I’d have to wait to find another doctor to prescribe it before I could refill it (I’ll write more when I’m not so z o m b i f i e d)I found myself stuck between a few pills left and a hard place. The only thing relieving me from the misery was this med, but because of new regulations, only certain doctors were allowed or were choosing to prescribe it out of caution. I was prescribed some other conventional prescriptions to control RLS (Miripex, Bacloven and others) which did nothing, and my Lyrica and then Gabapentin had for whatever reason ceased to worked. Now I was stuck.

I tried to talk myself into the belief that slowly weening off the Central Nervous Depressant and changing to the Bacloven that I could rid myself of this new, annoying, persisting symptom if I just believed hard enough the new meds would. But by the time I had taken the last pill and it was all up to the bacloven, I went 1.5 days and did what I guess we could call, ” possibly acceptable” but not at all “controlled” on the symtome scale. The morning I woke when I knew the last of the weening med had left my body, I was in hell. Really. I thought if I couldn’t get rid of this feeling, which was the truly inescapable task of needing to crawl out of your skin and also throwing all your limps off, I could see how and why people ended it. I know, that sounds extremely dark, because it is. But when you’re in that much extreme discomfort, you finally see why people could have it in them to do something that seems so far away and impossible in your own world. I wasn’t in hell, I had help and luckily one doctor to prescribe a partial dose until my appointment with the neurologist. Saved.

But that morning for those hours where I tried everything I could think of and could not find relief, I thought of the many who came before me and those now who experience similar symptoms to a much higher degree and do not have the safety net of their health systems or family to fight for them and find them relief of their pain or quell their discomfort. This letter from a past advocate, one I never knew until I read her letter, who experienced unspeakable greater pain and hell than I did, and lacked the help of her countries support of MECFS more or maybe as much as the US had me thinking how in fact fortunate I was. At the least, I had a family that would step in and demand or find a solution I wouldn’ve have been capable of myself.

Another thing stuck with me. When leaving one of my 14,000 doctors, one who is actually very good and informed particularly in the filed of dysnautonomia (a huge aspect of ME/CFS for most) he said something. “You need to be getting as ltitle medicine as possible from as few doctors as possible, otherwise, you and I will be flagged.” I felt such anger on that ride home. This is where so many MECFS patients are stuck. It’s suspicious of us to have too many doctors all prescribing different meds, and yet, there’s no one doctor for us to go….This disease multi-systemic, and most patients, if they can make it there, have at least 5 different doctors monitoring different parts of their malfucntionng bodies. How on earth would we break this puzzle without research and education to show these medical entities the truth about a disease it simply does not undestand, and who some are plainwright just choosing not to look at.

I always try to take as little of the meds as I can because I know they will wipe me, which would make a lot of people, then find a way to withstand it or another solution. We’ve tried magnesium, checked iron levels, yes I have lyme disease, I take multiple supplements and I’m pretty sure I can’t The Shape of Water-it and just live in a bathtub for eternity, so for the time, this is my limited option to escape the suffering of this strange, insidious symptom that we just can’t figure out. Last month I saw Dr. Klimas, (my hero!) who is running a whole scope of tests, and all our fingers are crossed that we may find answers. Not everyday is spent zombified, but my mom recently told me she was worried because every time she came over I sounded like a zombie and not myself and I said “maybe that’s just cause you come over at zombie hour” and she said that couldn’t be ruled out. But we both knew.

So, I try to get rid of the guilt that there is so much more I could be doing but that I am held back by from the very medicine that makes life bearable, but that can also make it very a slow moving, zombie-esque and unproductive experience. We can only do what we can do. When you’re already fighting “fatigue” (a really shitty word to describe a symptom of a really shittily named “chronic fatigue syndrome”, hmmm) a med like this is like 4,000 cherries on top. I definitely believe that either my body will very slowly adjust from whatever through it out of whack in October, or that I actually will be able to ween from these meds and get back to the thing I love more often—writing, advocating, and creating.

And by the way, check this out! If you live in Colorado, please come to this advocacy event; it’ll be a good time with a good cause. The Gelpi’s will be there, Grandma Bell (you’ll know soon enough) and lots of others. Not Monty, sorry to disappoint 90% of readers :(

Read more here about the event. And read more HERE for the write-up on our stories in The Daily Sentinel. Thank you Anne Wright for the article and for everyone who has helped make this event possible, which has been many, but especially Jordanna, (her dad) and my Uncle Mike who thought he was retired. Haha, sucker! Love ya.

I am sitting at a booth in one of those themed diners in a shopping center, adjacent to the clinic where I saw the specialist on Monday and had what looked like hundreds of vials of blood taken today for more testing. I figure I should eat even though I’ve no appetite. I never trust a menu this long, so I play it safe and order the soup and salad, which is neither good or bad. I guess that’s what you’re really asking for, a meal to quickly forget.

The music is too loud in here and I find myself strangely annoyed with the gimmicky decor. License plate style plaques fill every inch of wall space boasting phrases like “Stressed is Dessert spelled backwards!” and “Soup of the Day: Whiskey.” I stop. I just close my eyes a minute. Adjust. The problem is not the restaurant. It’s me and this body I have to animate—it doesn’t fit in the world in comfortable or easy ways. It’s like dropping a wild tiger in suburbia, except maybe the opposite. It’s like trying to build suburbia in the middle of a jungle, then complaining the tigers are noisy and sometimes scare the kids. No one else seems bothered by the music.

“Hey, you don’t belong here.”“I might say the same thing about you.”

I don’t want to be this young and think like a curmudgeon. Better to let go. It’s because it’s 11:30 and I’m on day 9 of a migraine cycle and I’m wearing real pants. I had to get blood drawn and I don’t normally exist before noon. Mornings are just constantly, reliably painful and tough.

Everyone has days where life feels so tired, so repetitive, that you want to hit snooze and wake up under some alternate sky where there is no weight to carry. No gravity, no effort required to move. Where everyone looks each other in the eyes. We listen. We don’t say the words “Sorry” followed by the word “but…” or “if”. Our hearts resonate with each other, and our heavy bodies have shed like snake skin, like the useless, heavy weight they’d become. There is a lightness in every capacity.

Tolle says this alternate side of the sky I am referring to is possible here on this side. And I believe he is right. But it takes so much practice and learning and presence. Presence. How easy it is to walk into a cheap diner and complain about decor. That kind of observation lacks creativity. Not to mention, it’s very counterproductive to complain about these things when you’re already feeling down. So I’ll tell you what I like about this costumed diner. All four booths in my vicinity are filled with at least parties of two people eating, and all of them are talking to one another. None of them have their phones out. A phenomenon! Particularly this couple across from me.

They are in their 60’s, and somehow it seems obvious they’ve known each other a long time. I could be wrong of course. They could be divorcees who met on ourtime.comand newly in love. But it’s not the sense I get. In my mind they’re in their Act III of their marriage with grandchildren they have pictures of on their phones to their friends at Bridge. I like that they haven’t run out of things to say or lost some kind of delight in the simple pleasure of each others laugh. They seem to laugh a lot, casually, throughout their light hearted conversation and this feels so good to watch. I always used to fear I’d marry a man and eventually he’d lose interest in me and I’d find his stories boring and then we’d be at a restaurant eating one day with nothing to say to one another. As though there was nothing new to discover about the other, or that we’d lose curiosity in the way each of us experienced the world.

But I know that only happens when we’ve decided we know a person completely and with total certainty. And if we’ve decided that, the issue is not the other person.”The human mind mistakes its opinions and viewpoints for truth…but it is no more than a viewpoint, one of many possible perspectives. Reality is a unified whole. Thinking fragments it into pieces.” Tolle says a lot about the “thinking” mind, and that it’s very useful in our world. But it’s also “very limiting when it takes over your life completely. It’s only a small aspect of the consciousness you are.”

Sometimes I seek the daily, thoughtless things about a person with such aggressive interest I think I might be dumb. Their calendars, notebooks, what they keep in their cars. One of my favorite hobbies is to take apart a guys wallet, piece by piece. All the useless receipts he saves. The frequent customer cards. An old crumbly picture, maybe. Movie stubs. Concert stubs. Their license—are they smiling in the picture or does it look like a mug shot? What made the cut for making it into the billfold and what didn’t. All tiny stamps of a person and his non-sequitor, paper trail of places he’s been. You can have the same fun or more going through a woman’s’ purse. Many clues in there. But these are little traces so few people see. Instead we go to dinner and say “Uh huh and what do you do? Oh interesting, tell me more about your boss. What a jerk!” I think first dates should be silent a exchange of wallet for wallet, or purse for purse, or wallet for purse, whatever. You get the picture.

My last boyfriends wallet, unless I’m remembering incorrectly, was a basic brown leather wallet that seemed to old for him and contained some concert stubs, because he was a music guy and not a whole lot else because he had a straightforward way of being in the world. A wallet was a thing to hold money and his license. But maybe more memorable was the night we went to dinner and left Monty and his dog Gracie home. When we returned, his wallet that he’d left on the coffee table had been chewed. His license, a credit card, social security card, and a one dollar bill perfectly torn in half littered the living room floor. We both loyally defended our own, claiming that “100%, my dog would never do that.” I thought it was kind of funny—a mystery we’d never know the answer to. Maybe it was Monty (it wasn’t), telling me Run! This thing isn’t gonna work! Mayday! Owell. Fun while it lasted. I still have the half chewed dollar.

I could say that the two buzzing gnats flying around my side salad are concerning, but you can basically always reduce these impulses to complain or feel disturbed by something or “talk to the manager” to nothing, because when you start to break them down, they just don’t mean all that much. We forget that so much of our devoted focus, particularly when it’s negative, is essentially meaningless. I am one person, and I chose to eat at a diner where children under the age of 12 eat for free between noon and 3. There may as well be a sign that says FREE BUGS. This isn’t the RITZ. The meal costs $10 and the waitress is nice. If you’re always making noise about your tiny discontent, you just become a human gnat. We should ask ourselves what our questions or actions or statements are intended to do for five minutes before we go running to every manager. It’s so often just a thoughtless impulse. Gnats! We could just as easily forget about it and move on with the day.

I take an Uber home, and I find myself alone in the back of Ubers quite often. ‘Often’ is a relative term. I’m appreciating that the driver isn’t trying to engage in conversation. “It’s hot out!” “Yes, it is hot out! Also, I have a doggy!” I’ll tip him more for that.

Miami is a picturesque place, and I like the sidewalk traffic. Watching the world through the window feels so much better than TV–and no commercials. Bonus! I see a couple kiss while they wait at the crosswalk. Then they smile and she says something that makes them laugh. I love seeing people kiss. Creepy? Maybe. I just like that kissing exists in general. There’s traffic, which is another easy thing to complain about. Tolle says complaining is one of the ego’s favorite hobbies. (Also being right.) But I’m in a quiet car. All I have to do is sit here, one of a few things where I’m actually quite skilled. Many beautiful things pass us by at a stop and go pace. I try to imprint the sights on my brain to take home with me.

I try presence. Just being aware of all my senses. I am grateful to be out in the world at all, when so often I am indoors. I try to remember how lucky I am that I was able to come here. What a gift it is to see a doctor who understands, who listens and looks you in the eye, who can help me find answers. (Thank you Dr. Klimas!) That I have my brother and his beautiful family to stay with and help care for me. That it’s time together we wouldn’t have had were I well. Yes, I have a body that feels like a decomposing pumpkin at times. And I actually feel I may look like a decomposing pumpkin at times. (See video below) But so many moments to be grateful for. So many gifts. Count them. Keep counting. They add up faster the more awake you are.

Keep fighting. Last year was hard. I believe somewhere in my depths, this one will be better, no matter the directional trend my health takes. I know we’re getting close. I tip the Uber driver and leave feedback. “Thank you for the quiet.”

“The primary cause of your unhappiness is never the situation but your thoughts about it.

Be aware of the thoughts you are thinking. Separate them from the situation, which is always neutral, which always is at it is. There is the situation or the fact, and here are my thoughts about it. Instead of making up stories, stay with the facts. For example, “I am ruined” is a story. It limits you and presents you from taking effective action. “I have fifty cents left in my bank account” is a fact. Facing facts is always empowering. Be aware that what you think, to a large extent, creates the emotions that you feel. See the link between your thinking and your emotions. Rather than being your thoughts and emotions, be the awareness behind them.” (pg 5)

This is a small passage but it’s pretty rife with depth and possibility that I feel I could discuss it for hours over coffee and a crumpet, whatever a crumpet is. But it’s an interesting premise. Given that this is a blog mostly about life through the lens of being sick, I have to relate these things to my own experience. Sometimes I think, this is such an eye-roll. A bore. I want to tell others stories and look at these things through their lens, but I not only don’t have that access, I don’t have that right. I only know truly what it’s like to be in this world as me, Mary, and so I use what I read and try to apply it to my own life experience. Surprisingly, it helps. It’s funny how reading passages like this, you can think of other people and be spot on by saying “Yep, Dianna totally does that.” But the more conscious approach is to look at it and become aware of the ways in which you’ve “missed the boat” this same way at times, or catch yourself doing exactly what he’s (Tolle) talking about.

The part about making up stories is perfect, because it is surprising how often and how quickly our minds resort to this tactic, I guess as a mechanism of just not looking in or at ourselves in any meaningful way, (because that is both difficult and sometimes painful) but always pointing the finger outwards. It evades personal accountability. But telling stories has long been something we all do, and I can think of so many times I’ve done it, then facepalmed myself in the forehead later thinking, What was I thinking?I literally just made up some scenario in my head, and believed it, and was absolutely completely wrong.Someone doesn’t call back in a timely manner. You don’t like their response to something. Your jeans are missing and you’re convinced maybe they accidentally took them and GOD DIANA WOULD SO DO SOMETHING LIKE ACCIDENTALLY TAKE MY JEA…..oh here they are… in my closet…”

It’s crazy how fast down the rabbit hole we go, convinced that Diana didn’t call us because she just doesn’t care about our friendship anymore, and you know what, maybe she NEVER did?! Maybe I should send her a mean text! “Oh, her grandma is in the hospital and she’s been away from her phone…”Oh, oh Diana, I’m so sorry to hear that. What can I do?” How stupid our egos can be! And what good story-tellers! They are always looking to be wronged, which is why they can start a fight about anything, literally anything. Frozen Yogurt? OH I’LL TELL YOU ABOUT FROZEN YOGURT! Um OK Diana, calm down. DON’T TELL ME TO CALM DOWN!!! *turns into the hulk, flies away*

It doesn’t mean we aren’t sometimes wronged. Or we don’t sometimes deserve to feel hurt. All of that will happen. It’s more about response to painful stimuli that human behavior just seems to get wrong. We are clearly, still learning.

Hey, this water is pink!OK, so we’re really good at blaming. And great at creating scenarios in our head that aren’t actually true except in our own self-made ego reality. (Which isn’t actual reality) And we’re really bad at self-reflection. I say “we” because I’ve seen this actually happen in action. To me, to others. It’s crazy! Never seen it? Open your eyes and wait for the Holidays to come around or wait in line at Walgreens or get stuck in traffic, you’ll find plenty of it. Passive aggressiveness. Blaming. Gossip. Anger. Insensitivity. All the yucky stuff that makes things which are supposed to be fun, not so fun. And we’re all guilty. It’s easy to want to point a finger at one person, but if you’re offended or participate, even in tiny ways, you’re part of the dance too, my friend. And I have done plenty of dancing.

The other part of this passage that I think is so important is the difference between facts and stories. Saying “I’m totally screwed” is a story, like he said. But so often we get ourselves so upset, so anxious, so depressed about things that are going to unfold one way or another, and in that present moment, you’ll address them. But if you’re too far away from this present moment, always stressing about the future, you will never enjoy life in its natural form–which is always happening in the now. It doesn’t mean you just mosey around until “the future arrives.” If you’re truly present in the moment we call Now, you’ll be ready for whatever happens, which you have absolutely no way of knowing how it will unfold. He also says this:

“To be in alignment with what is means to be in a relationship of inner nonresistance with what happens. It means not to label it mentally good or bad, but to let it be. Does this mean you can no longer take action to bring about change in you life? On the contrary. When the basis for your actions is inner alignment with the present moment, your actions become empowered by the intelligence of life itself.”

Duuuude, deep stuff. It’s easy to be sick and tell myself stories like “This isn’t fair.” “I can’t catch a break.” “It wasn’t supposed to be like this.” But all according to what? According to my version of what I thought my life should look like–none of it based in the reality that my life is. When I am in true stillness, and I’ll reiterate this time and time again– if there is something crucial missing from my generation, and the baby boomers will tell you we don’t know what hard work is and we’re ultra sensitive and have all kinds of nice things to say–what my generation is truly missing is stillness.

It is very hard to self-reflect in a noisy, demanding office, a loud home, when you’re constantly with people, when you refuse to be alone, or as soon as you have solitude or quiet, you turn to your mobile device as some kind of virtual company. So few look at time alone as an advantage to reflect. Or do whatever you want. Pray. Meditate. Read. Just try to be still. Try not to get on social media and see if you can be comfortable, alone with only you. People think “being busy” means being important, but it really doesn’t. Try doing nothing. See how long you can do it without outside stimulation. Then tell me you wish you were sick and didn’t have to go to work. Hah. I always loved that line.

I don’t think you have to be absolutely quiet or alone in order to obtain what Tolle is talking about. If you are awake in these crucial moments–at work, with your kids, at the dinner table, then you’re effectively reaching consciousness. Take time to acknowledge what you have and the good in your life. It’s all there; it’s up to us to open our eyes and see it.

I’ve been meaning to create a segment for a very long time where I take passages from Eckhart Tolle’s books and put them here for the world, all thirteen readers of you, to see. ;)

There are certain passages from all of his books that I have underlined, highlighted, circled, starred, tabbed…you get it. And they all come from separate times I’ve read the book. The passage I’m about to transcribe here comes from a book of his called Oneness With All Life. I fear even writing that because it’s an easy way to turn someone off to it–there’s so much “new agey” crap about solving the mystery of life and “finding happiness” that the more details I give I’m afraid the more you’ll be resistant to reading it. I can understand that, there’s a lot of people claiming to have LISTS and PROGRAMS and FIVE EASY STEPS promising you happiness that it’s almost depressing. Happiness is not some trophy you come upon and clench when you’ve truly done it. Don’t we know that by now? How can we not be blindingly aware that no, money doesn’t buy you happiness. Duh. Look at your rich friends or family…do they seem insanely happy? No. Of course they don’t. They’re just often unhappy living with SUPER awesome amenities. But they do get to fly first class and I always tell myself if I’m ever rich, THAT’S where my extravagant purchases will go to…traveling first class. I’ll remember with a shudder the horrors of the main cabin. See? Already spoiled. Complaining about the incredible GIFT OF FLIGHT.

I remember in an airport once, I saw a book called the Happiness Project….which was all about following these set of rules, because as many do, this woman had found herself married, two kids, a job and loving husband, and yet not really happy. So she began the voyage. And developed some program to follow to be happy. And guess what? She seemed to find happiness! And maybe she really did. But reading it I couldn’t help but think that it just felt a little obvious and maybe a little gimmicky. I believed she was truly trying to find happiness, I just couldn’t buy that these were the ways to “get there.” There aren’t rules to being happy, people love knowing what to do, it helps them feel in control, and that alone assists with “happiness”. Which is why when things come up unexpected, we just lose our minds because WE DIDN’T PLAN FOR THIS DEBORAH! There’s a lot of people who will promise you can be happy, and live an entirely great life, if you just tweak a few things. And sometimes they’re right. But that self-help section is bursting at the seams with many more who don’t seem to know, and we’re gobbling it up for a reason: because we all want to know. TELL ME!!! I’ll do anything to escape my misery!!! Wait what? No I won’t do that.

The truth is, according to the modern mystics, in order to achieve our own inner level of peace, we have to look deeply at ourselves, not others. We have to change ourselves, we have to see ourselves, become conscious of our life and our way of seeing things, our patterns we’ve been taught–to react and stress and yell, when really none of that is necessary. If it rains when it’s supposed to be sunny, it’s going to happen whether you lose your mind and freak out or say, oh well, what should we do now? And if there’s one thing I’ve witnessed time and again, it’s that when someone is freaking out because things didn’t go “right”, and other people are not freaking out and casually just moving along because um, hi, we don’t control the sun, THAT. PISSES. THEM. OFF. Interesting, isn’t it. That’s the ego, clinging for life, and now not just angry that its raining but that OTHER people aren’t angry it’s raining. It’s ridiculous. But it’s the way it bees, and it doesn’t have to bees that way. I just know that we should be incredibly leery of promises that your life and your happiness can be changed and attained all in five easy steps! I’m no Einstein, (REALLY!) but I know when it comes to happiness, more importantly, when it comes to true inner peace and joy, there are no shortcuts. Life is really hard, and you can’t evade the pain. But you don’t have to create extra pain for yourself. The “extra arrow” as my friend Daniel always talked about. The story we tell ourselves about the facts. You’re going to experience pain, but you’ve got to do your work to figure it out, find the hidden seed of grace, and find how to grow bigger from it bot let it swallow it you whole. But a lot of our pain is self-created, and I do it to myself all the time. Convince myself of some madness or offense, only to find out later I was TOTALLY wrong and an idiot for believing what I did. That’s how we can help ourselves. Ignore ourselves. Haha. Ignore our thoughts, pay attention to our inner self–two very different things. There’s no “List of “10 things to follow and you’re all set!” So burn that book, if it exists, and I”m sure it does.

Tolle and a few other mystics are very upfront about truth and about how to go absorbing what they’re putting out there. But they are of such a different breed–they’re not writing about how to “get happy.” Which is what people want. 5 steps to get happy! They’re writing about how to be conscious. How to save yourself from causing undue harm or pain to yourself or others. And when you’re conscious in the world, you’re honest, with yourself and others–you’re honest when you’ve messed up, when you’re lucky, in pain, grateful, loved, sorry, and when you love. When you’re conscious and honest, you can’t lie to yourself about what the true source of pain is. You may not be able to know what it is, but you can definitely know what is isn’t.

SO, every morning, I read from Tolle’s repertoire of wisdom—books I have read over and over and over and I will continue to do so. Because all of them elicit further consciousness every time you read them. I feel similarly about Michael Singer, Marianne Williamson, and especially Gary Zukav’s Seat of the Soul. I’m sure there are more I’m forgetting. But I have long days. I don’t leave the house a lot. I have to learn how to harness the normally spent mental and psychological energy that would go outward into the world, into tasks and work and conventional effort, at home, in silence a lot, in solitude a lot, with no plans, no control. The biggy. This is not easy and can be a great source of pain, more than the illness itself. So, on Tuesdays, we’re gonna take Tolle’s words that really stick, with a cup of tea. And I’ll just write them here. Maybe they’ll stick with you too. But please don’t give up on this post because I’m rambling. I’m gonna stop. Here’s Teacher Tuesday’s Lesson One, and it’s one of the more profound and lasting passages I’ve read. SO here it goes. Also I just jumped right in to the center of his stuff so we’ll have some preliminary terms to go over. We’ll do that next Tuesday. I’m still learning. See you then.

People believe themselves to be dependent on what happens for their happiness, that is to say, dependent on form. They don’t realize that what happens is the most unstable thing in the universe. It changes constantly. They look upon the present moment as either marred by something that has happened and shouldn’t or as deficient because of something that has not happened but should. And so they miss the deeper perfection that is inherent in life itself, a perfection that is always already here, that lies beyond what is happening or not happening, beyond form.

Accept the present moment and find the perfection that is deeper than any form and untouched by time.

The most important, the primordial relationship in your life is your relationship with the Now, or rather with whatever form the Now takes–what is or what happens. If your relationship with the Now is dysfunctional, that dysfunction will be reflected in every relationship and every situation you encounter. The ego could be defined simply this way: a dysfunctional relationship with the present moment. It is at this moment that you can decide what kind of relationship you want to have with the present moment. Friend or enemy?

The present moment is inseparable from life, so you are really deciding what kind of relationship you want to have with life. Once you have decided you want the present moment to be your friend, it is up to you to make the first move: Become friendly toward it, welcome it no matter in what disguise it comes and soon you will see results. Life becomes friendly toward you; people become helpful, circumstances cooperative. One decision changes your entire reality. But that one decision you have to make again and again and again–until it becomes natural to live in such a way.

Why is 300 dollars considered on sale. But they’re on sale you guys! SALE!

I’ve got a lot more writing to do, and mindfulness to be mindful of and reading of things that warrant being read. But all I can think about is these loud pom pom shoes (their words not mine.) I keep picturing if a clown/magician hybrid was at a birthday party and said “Hey, wanna see what kind of footwear I can produce, merely by farting?” THESE would be the shoes. And they’re not even that bad. In fact, they’re kind of funny. And I appreciate a sense of humor in fashion. Not to mention, in the marketplace of women’s footwear, (namebrand anyway) $400 is almost nothing, which is insane in its own right.

But these aren’t Louboutins or any of those other fancy hard-to-pronouce brands that warrant their price by brand alone and also merely sounding expensive. This is just the world we live in. Why can’t I get them out of my mind? That red color? They’re not that bad. Could I actually like these shoes? And then not like myself because I actually like these shoes? No. This is getting too existential and there are wars going on. This never happened.

BUT FOUR HUNDRED DOLLARS FOR CLOWN BUTT EXPLOSION SHOES? OK stopping. I’m now thinking it’s possible I might like the shoes. Also, I made this blog about shoes a long time ago with an oppressive amount of indoor time on my hands. I never released it into the wild because it’s not actually ready or done or whatever. ButI guess now is as good a time as any. I’ll work on it. It’s calledIs This A Shoe? Inspired by an ad for something that I think was supposed to be a shoe but I truly could not distinguish if this was something to wear on your foot or a childs toy from Ikea. (See second shoe from the bottom) Attributed also to the amount of inside time you have when you’re sick and in bed and have run out of cracks to stare at crawling along the ceiling. Click to see shoe blog.

Oh yeah, and now some vastly more important matters before I go. Good God I should be ashamed of myself. This should be at the top. Anyway, pay attention:

Unrest the documentary is on Netflix, so you ain’t even gotta pay. Just watch it. You know you were just gonna watch The Office or Parks and Rec again, or feel sad that Stranger Things is over for a depressingly long time, so do yourself a favor and watch a really good, real life, movie. If you don’t have an account, email me, I’ll give you my password so you can watch.

SIGN/SHARE the petition. I abandoned it a while. It was a sickly and bad year, yada yada yada. Lots of excuses. But if I can advocate other’s work, why am I not advocating this one? It’s dumb, I’m dumb sometimes. So please, just know the petition is still UP AND RUNNING, and yesterday, we hit 44,000 signatures!! Still really, really incredible it’s acquired those kinds of numbers. All the more ways to DISRUPT and get the world to see. Power in numbers. Yada yada, you know all this. It would be really sweet to get to 50,000 by Spring, and then one million by summer, don’t ya think? Me too. I think we can do it. So let’s do it.

Until next time I come across something banal and obvious that I don’t understand…

Like this:

Sometimes it’s not easy to recognize the things in life that deserve gratitude. When life is smooth sailing, everything can become so repetitive, so routine, that you almost operate on autopilot. You come to expect things will be a certain way and forget that nothing is actually promised or guaranteed. The bottom can fall out at any time. Most of us have experienced or seen that happen to someone, and it doesn’t always make sense why. It doesn’t have to I guess.

On the flip side, when you’re going through a particularly tough time, it’s unsurprisingly hard to find reasons to be appreciative. Most people have endured a “When it rains it pours” time in their life, and usually during the rain, it feels like some kind of cosmic punishment. It’s not exactly easy to take a few minutes of stillness and consider the things and people you’re grateful for when life is kicking your proverbial ass. And yet there are always things, always people, rare moments or a single act of kindness that if you think long enough, will start to emerge. If nothing pops up, keep thinking. It will come.

I wouldn’t count this year as one of my easier ones or best in health. There’s been a lot of learning and experiences that I wouldn’t write on my “List of Pleasantries” if I had a “List of Pleasantries.” There has been pain and heartache and a lot of feeling lost. But I know that even among all that, when I take even a minute, once a day, and write down the things I’m thankful for, I am less likely to get pulled in or lost in my ‘story’. I have to continually remind myself of the good things in my life and the people I am lucky enough to love and be loved by. Some days it’s easier to remember than others.

It’s not a denial of pain, which requires its own outlet. It’s just a deeper look beyond the surface of larger things at work. It’s seeing things and people in the spaces, the gaps, the small pocket of happiness you might have missed before. My more challenging experiences this year have actually illuminated the ways I’m fortunate and I have felt more gratitude now than at any other time of my life. It’s almost counterintuitive, I wouldn’t have expected that. But pain can do all kinds of things, it’s a shame it has to hurt so much. Jeesh.

Expressing gratitude has surprised me in how it shapes my outlook when I keep it in mind. I’m always trying to at least identify one thing to be thankful for. Even if its “I’m grateful this crappy day is over,” it’s still acknowledging something that encourages growth, momentum, that phrase I’m always repeating in my head: Keep going. Keep going.

I don’t write this as though these things are easy. It doesn’t take much for me to slip down the rabbit hole of feeling bitter about where I am in my life, about being the age I am and still requiring help, at not getting the life back that I had before. I miss my friends. I miss wearing real clothes. And I become afraid at what my future will be.

Every year that goes by I become more scared that I’ll never be an actual adult. I’ll be in a permanent state of need. I’ll be 80 and my 120 year old mother will be feeding me cream of wheat and we’ll fight over which show to watch. But I don’t like the idea of anger or bitterness being the last things I think of before I fall asleep or when I wake up. So I work hard to see past the outer experience and at what it might be allowing to happen underneath. Being bitter about needing help from your parents can just as easily be gratitude for having parents that are willing to help you. It’s all about perspective, and taking the time to see and acknowledge things on the other side, and there’s always another side.

It’s OK to acknowledge when things suck, and being sick all the time sucks, we can say it. But it’s really only when I jump into a future I can’t know, when I try to gain control over something that isn’t possible that I get into trouble. Sometimes I find myself stressing about things that may not even happen, or things 20 years down the line. What? I don’t even know what I’m doing in an hour! Here in the present moment, there is space for things like gratitude to exist. When you’re panicking, there’s hardly room to breathe, let alone be thankful that there are montages of people falling on youtube and it made you laugh till you cried.

If I my mind gets too carried away, goes too far down the rabbit hole, I give it a slap on the wrist, a mental spanking. And I tell myself to look. It’s not hard to see that I have the things that matter. If I can just stay present, take things one at a time, which oddly enough is sort of required when you’re sick, I can stay awake. I can still see the things I missed before and treasure simple times. There will be chaos and wreckage and things will fall apart, but it seems like the vital things are always somewhere in the quiet aftermath when you take time for stillness and look. The things that matter are there. I guess they never left in the first place.

My favorite author, Haruki Murikami wrote something pretty incredible that I play over in my mind a lot: Pain is inevitable. Suffering is optional.

A pretty simple and beautiful way of considering life, yeah? I think so too. I’m working on not suffering on top of pain. And I have a small but incredible circle of people in my life who help me see what needs seeing or remember what I’ve forgotten in a moment of madness. I am grateful for so much, even when things are hard. It helps to remember.